HIV stigma keeps many men from accessing healthcare

KAMPALA, UGANDA — Richard* was diagnosed with HIV in 1990, when he was only 17 years old. When people in his village found out, he faced stigma from the community.

“People would say, ‘Nakwia’s son will die in the next three months,” he said.

Richard is now the national coordinator of the Positive Men’s Union or POMU, a non-governmental organization he founded in the early 90’s when he realized that men were avoiding testing and treatment for HIV.

Because HIV is sexually transmitted, it is often highly stigmatized. But many non-governmental organizations in Uganda are pursuing ways to decrease stigma against persons with HIV.

Richard said that before he received counseling, his self-stigma levels were high.

“I had my own stigma that even those days, whenever I passed by people when I looked back and the people looking at me, I would think they are discussing me,” he said.

But meeting other HIV-positive people and receiving encouragement helped him overcome his self-stigma. Richard  said African men are expected to play the big man in families and that this expectation of strength and leadership causes them to fear diagnosis and contributes to an unwillingness to admit they are sick.

“Because as a man, you are expected to work and earn money and bring bread back home,” Richard said.

Since its founding in 1992, POMU has grown to over 6,000 members all over Uganda. Its HIV-positive members often reach out to men as they speak to community groups.

“Having people like us, not only talking but giving our experiences of living with HIV, that also encourages other men to come out and take up these HIV services,” he said.

In the United States, HIV first affected the gay community which was already a marginalized segment of the population. In Uganda, the disease primarily affects heterosexual people. Gender inequality and deeply ingrained societal roles for men and women contribute to self-stigmatization.

“A man in most cases has multiple partners and if he tested he would be kind of compelled to disclose to all those partners which makes it hard,” Richard said.

According to the Uganda Demographics and Health Survey 2016, 20.6 percent of men reported having two or more sexual partners in the previous 12 months. Of those, only 20.8 percent said they had used a condom during their most recent sexual intercourse.

Stigma against people with HIV exists in the United States as well. According to a survey of 1,437 teens and young adults by the Kaiser Family Foundation in 2012, 62 percent said they would be uncomfortable having a roommate who is positive and 68 percent would be uncomfortable if someone who prepared their food who was positive.

Fred Ssenga is an HIV-positive employee at The AIDS Support Organization or TASO, the first organization dedicated to supporting people with HIV in Uganda. TASO is also where Richard first met with the small male support group that eventually grew into POMU. Ssenga said men fear their HIV-positive status will affect their relationship with women.

“You see most men they fear to be tested because they think that when women see them that when they are HIV positive maybe they may run away from them,” Ssenga said. “They need more counseling and to be tested.”

Fred Ssenga, who requested his face not be revealed, stands in a room at TASO, where he works as a clinical service provider. This involves packaging antiretroviral drugs for clients. He first came to TASO as a patient in 2010 and has worked there since 2012. (Gwynneth Hurley | The Media School)

HIV counseling often includes information about the possibility of discordancy in couples—where one partner is positive and the other is negative. Florence Awor is a counselor and former nurse at Reach Out Mbuya, a Catholic non-governmental organization that provides HIV related services. She said in her experience, men are extremely hesitant to test for HIV.

“They wait when they are too sick to the extent that family members has to carry them,” Awor said. “They are fearing to come and face whatever is there.”

Overall, many more women access Reach Out’s services than men. Awor said there should be more  focus on making services available to men at times and locations that fit their schedules.

“There is poor men seeking treatment behaviors,” she said. “There’s sort of an ego within them that make them feel they are too big or it’s not right for them to be seen in such a place, so men are not many in the program.”

Alex Mugenyi is the head of HIV prevention at Reach Out. His job involves educating the public on the facts of HIV. He has heard many myths surrounding the virus that prevent people from wanting to test or share their status if they are positive.

“People still have a thinking that HIV is for the poor and it’s also a punishment and a curse from God,” he said. “It is really not that because the ways through which HIV is contracted are really very clear.”

Mugenyi believes self-stigma is high in men because they feel pressure to appear strong, whereas women are more proactive in terms of health because they have to care for children.

Prosper Byonanebye is the head of programs at the Uganda Network on Law Ethics and HIV/AIDS or UGANET. It mainly focuses on advocating for women’s legal rights, and part of addressing this problem is changing the attitude and behavior of men.

“The man’s mindset is that an African man shouldn’t get sick, shouldn’t get down, how can you look at me at a health facility,” he said.

Byonanebye said engaging cultural and religious leaders to advocate behavioral change among men is key to seeing real change in the treatment of women in Uganda. Changing the perception of societal roles of men and women may also help men deal with the pressure they place on themselves and the self-stigmatization that follows.

Sarah Tumwebaze works at the Uganda Network of AIDS Service Organizations or UNASO, which organizes and coordinates the efforts of different AIDS service organizations to enhance quality HIV/AIDS service delivery. She said men do not like to be seen at health clinics so they avoid being tested.

“Its OK for you men to go to the hospital,” Tumwebaze said. “It doesn’t show that you’re weak, it doesn’t.”

Tumwebaze sees flaws in the Ugandan governments approach to male involvement and criticizes the lack of education to young boys regarding lifestyle choices for men and the treatment of women. She believes education is the key to overcoming the stigma.

“They need to tell them the facts about life and the facts about HIV,” Tumwebaze said. “It’s not only women, men suffer from it. Currently the statistics say that 8.2 percent of the women have HIV and only 6.1 percent among men but this is really because one man may have 3 women so it’s not really a problem of women it’s also a problem of men.”

[* Richard requested that only his first name be used to avoid discrimination and harassment.]